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Monthly Archives for September 2014

Six months ago today I sat in the urologist’s office and listened to her tell me I have kidney cancer that has spread to my lungs. At the time, everything turned upside down, and none of us really had any idea what to expect. I certainly couldn’t place any bets as to whether I’d be here 6 months later. But here I am. And to be sure, there’s still a lot of uncertainty. I haven’t got any sort of clue what to expect – for life span, quality of life, etc. My gut says I’m probably going to go along for a while with a high quality of life Until I don’t. I don’t know how long, but at least I’m measuring it by time periods longer than a day or a week.

This has been one of the most tumultuous 6 month periods of my life. (How could it not be?) But, in some ways, especially since I finished therapy, it’s also been one of the least tumultuous. Almost a little boring. Not my life, but the whole cancer experience. Sometimes I struggle to find things to blog about, because there’s just not much to report. Although I visit the hospital about once a week, it’s generally for something innocuous – support group, blood draw, pharmacy pick up, blood pressure test. Sometimes I even have scans. I also email my oncologist from time to time. Yesterday I asked about upping my dosage of Votrient.

See. I told you. Snoozefest.

Meanwhile, the rest of my life is going well, and feels full. I take a watercolor class on Wednesdays. I have coffee with friends on Tuesdays, and try to do lunch with one or more friends each week. I meet with Jule (chiropractor to the stars) once a week. I hike a couple of times a week. Last night I joked to a friend that I just don’t have time for a job!

I feel relaxed, not stressed. I’m becoming very good a kicking stress to the curb, and am doing my best to avoid personal drama (though it sometimes pops its head in.) And sometimes, I cry a little, but not often or for very long. It reminds me of when I was pregnant with Jake, and every once in a while I’d throw up. Just a little, usually with no warning, and rarely with any other feelings of illness. The tears happened last night on my way to a get together. Feeling fine, driving a long, then Bam! a few tears, and back on my merry way.

But I’ll shed no tears (except in joy) for making it to my 6 month post diagnosis mark. Instead, I’ll add another tattoo to my wrist, and pack my bags for another retreat next week.

Since completing my therapy sessions, I’ve been living the past month or two more “lightly”. Although I think about cancer often, the thoughts are more fleeting, less all-consuming. I am not living in denial, but the work I did in therapy has given me the ability to better regulate my feelings about cancer and dying. I don’t want to go deep right now, and can put the introspection and dealing with the prognosis aside for a while.

We’ve been starting to plan for the future again – a welcome change. We are planning trips, both as a couple and for the whole family. I’m beginning a watercolor class; I just bought all of the supplies, and we’ll start painting on Wednesday. I have an interview this week to join the hiking patrol for the regional park system, and yesterday we had the first hike for Together on the Path.

Although I haven’t had time to meditate like I wish, and haven’t done as much drawing or writing, I can recognize that I do have control over those things, and it’s really up to me to carve out the time for those activities. But, overall, I like living like this. There’s been little drama, and my life feels quite full of good things. And for all of that, I’m very grateful.

Once again, my hair looks crazy. I did call it when I said I could use my cancer drug to create striped hair. I’ve got stripes of blonde, stripes of grey, stripes of dark brown, stripes of lighter brown. I feel the need to look like I’ve actually planned my hair color.

And so I bring you the Orange is the New Black Hairstyle Roulette. Pick a color, pick a style. They don’t have to match.

Here we go.

The Morello

Morello, our favorite feisty, bus driving stalker, has hair that is close to my natural color. I know the brown will look good, but it’ll be a bear to keep up – and anyone who knows me knows that upkeep is not my forte. My hair is currently about the same length as pictured above, so that length wouldn’t take any effort on my part at all. WIN! But, really, it’s a little tame.

The Red

I don’t think I’ll ever be quite as bad ass as Red, but I have dreams that I’ll be able to cook again (though hopefully better than her prison fare.) I’ve never rocked hair quite as Heat Miser red as Red does, but that could be a fun change. Again, upkeep. My hair probably won’t spike as well as hers, but it often has a mind of its own, so a medium short cut would be easy.

The Nicky

I admire Nicky’s sarcastic humor. I aspire to it, actually. I have done Nicky’s more orange-red hair color, and I think it works pretty convincingly on me. I’m not entirely thrilled about long hair, but I know that my husband would love me if I let it grow as long as Nicky’s. But, again, upkeep on the color, and trying to tame it with the length – ugh!

The Yoga Jones

Now, supposedly, peacemaker Yoga Jones and I hail from the same area. But while she was growing pot, I was just doing the growing up, going to college thing. Jones’ hair is the closest to the color that is growing now, thanks to the Votrient. (Premature grey, premature menopause, and on top of that, cancer? Yay!) So, this hair color would be the least amount of work on my part. I enjoy the ease of a short hairstyle, or if I feel like shanking someone, I can let the hair grow out and channel Taslitz, one of the senior inmates.

The Miss Rosa

Miss Rosa has been living with cancer in prison. Cancer sucks. Dying of cancer sucks. Dying of cancer in prison? Well, maybe that won’t be happening. I’ve always thought it would be interesting to shave my head. But, no, I’m not going there. I just think Miss Rosa is the bomb.

The Showrunner

Jenji Kohen is Orange is the New Black’s showrunner. Apparently, what you see is her way of dealing with grey. Given the similarity of our hair length, curls, and face shape, I think I could probably pull the style and the color off.

So, what say you? Give me the color and style combination you think I should go with.

I-70 looks like a fun road to drive, but I was in a rented Mazda , which looks at a hill like I do now, “I’m pretty sure I can make it, but it’s going to be a long, slow haul.” If I didn’t pay close attention and kep my food to the floor, I’d end up going 40 and pissing off even the truck drivers. I eventually made it to Leadville, despite my putzy little car and all the stop-the-car-it’s-gorgeous! scenery. At 10,000 feet above sea level, Leadville is surrounded by mountains that tower above the small town. If the view doesn’t take your breath away, the thin air will certainly do it.

Saturday morning I met up with the Live by Living crowd: 7 volunteers and 5 participants (nice odds!) I’d realized the night before that my body wasn’t going to let me hike that day. Even walking across the Safeway parking lot left me winded. There was no way a 4 mile hike with 1300 foot climb was in the cards. So, two of the volunteers and I dropped the rest at the trailhead then drove up a tricky and steep dirt road to the hut.

Uncle Bud’s Hut

The 10th Mountain huts are a series of huts on federal land that are open to the public. Our hut, Uncle Bud’s, situated at the top of a meadow, provides about a 180 degree view which is dominated by Mount Massive to the south. Inside, there’s a kitchen, dining area, woodstove, lots of seating, and sleeping for around 20 upstairs. To the side of the cabin are the outhouses, with windows. That’s right. Even the bathrooms have a great view.

Mount Massive

Saturday was spent waiting for the rest of the group to arrive, getting to know the volunteers and participants, exploring the cabin and immediate area, and, most of all, enjoying the views, the sun, the fresh air. The volunteers cooked dinner – pasta with chicken and vegetables, a couple of different salads, and, of course, cake to finish. We spent the evening around a campfire outside.

Ready for the hike

On Sunday, I woke up feeling good and ready to hike. After breakfast, we strapped on our packs and headed up the mountain. It was slow going for me; both the thin air and my previous breathing issues made it necessary for me to stop every hundred feet or so. But we made it to our goal of the treeline, and spent a while just enjoying the views. During the hike, we got some rain – a pleasure for me, since California has been so dry. Plus, I got to pull out my wet weather gear for a change! That evening, we held a guided meditation under the stars and nearly full moon. We followed this up with time spent talking, enjoying the moonlit vistas, and drinking hot tea.

On the trail

While the setting was fantastic, what made this retreat truly special were the volunteers. Their attentiveness and anticipation of our needs was extraordinary. I felt completely pampered – quite a feat in a cabin with pit toilets and no running water! The volunteers cooked delicious and healthy meals, plied us with water, tea, coffee, and gave us all emotional support during our hikes.

I can’t say that this retreat changed my life, but it did give me a few days of peace, pampering, and relaxation. being up in the mountains forced us all to turn of civilization for a while. to look at the horizon instead of our hand held devices. To interact with nature and each other.

I plan to go again next year!

Live by Living provides transformative outdoor experiences for cancer survivors and their caregivers. They offer several retreats in the Rockies each summer, as well as day hikes in the Denver area year round. You can donate to Live by Living on their website.

Late Tuesday night I got home from my Live by Living trip to Colorado. I’ll write more on that later, when I’ve been able to process all my thoughts and feelings about it. For now, I can just say that it was an amazing, wonderful trip.

Coming home, I feel like I’ve been dropped in this strangely foreign world once more, and have to readjust. I haven’t had time to sit back and reflect as I’d like. Instead, my days have been filled with carting the kids to school, volunteering in the middle school library,and running around to various appointments. (You know, all the normal day to day things for the parent of tweens and teens.) I’m writing this post quickly so that I can make it to an appointment across the bay in Palo Alto later this morning.

I have written about my troubles breathing, and before I left, things seemed to get pretty bad on that front. Climbing the steps to our front door would leave me winded, as would chasing the cat across our (not large) back yard. I didn’t have much respite from breathing issues when I was in Colorado – although the air was lovely and clean, there wasn’t much of it at 11000 feet. I do notice a slight positive difference now that I’m back down at sea level, though I suspect that won’t last for much longer.

Before I left, I talked to my doctor about the breathing problems, and he brought up the possibility of heart failure caused by pazopanib/votrient, my targeted therapy drug. One of my appointments yesterday was with the cardiology department at Kaiser, where I had an echocardiogram to check my heart. I still need to wait a few days for results, but I’m hoping that it won’t be the cause of the problems.

I’m not sure what I’d like the cause of the problems to be – most of the possibilities that come to mind aren’t pretty. I’m much more worried about how my breathing problems will affect my quality of life than I think I’ve let on. Strangely, I don’t feel worried about it affecting my life span, just my quality of life. As I get more information, I’ll continue to update.

Lately, lots of people have been asking me how I’m doing. They’re not asking in a “Hey, how you doin’?” way. They’re asking in a putting their hand gently on my shoulder and gazing into my eyes “How ARE you doing?” sort of way. I’m finding that to be a difficult question to answer, because I don’t really have an answer that works.

“I’m doing fine.” Yes. True. But it doesn’t acknowledge the emotional and mental work I’ve done to get to a point where I can give a nice, bland answer (and mean it.)

“I feel good.” Yes, also true. Most of the time I feel good, even great. (Is that what they expect to hear?) Ok, things have changed – I can’t breathe as well as I used to, but mostly that just slows me down a bit. I’m having hot flashes all the damned time (Sorry, not cancer related. Does that count?) I’ve also been dealing with a tweaked shoulder, which caused some pain. My chiropractor (and all around amazing woman) was able to fix that. But really, I mostly feel good, healthy, able to walk long distances (as long as they’re not up hill.)

But what is still difficult to talk about is that I’m stuck with this stupidass cancer for good. There’s no take backs, not setting the clock back, no going back to the good old days. And even though I’m at a point where I can say “I’m fine,” and mean it, if you scratch the surface too hard, you’re going to get to the really gritty stuff. I’m pretty sure that most people who ask don’t want that gritty stuff. When they hear it, their eyes tend to glaze over, they try to change the subject, offer encouraging words. And right now, I’m pretty sure that I want a break from the gritty stuff, too. I’d like to take it easy for a little while, to the extent that if they called up with a place at Commonweal tomorrow, I’d probably turn it down.

It would be much easier if people asked, “What have you been doing?” because though the answers are going to be similar each time they ask, they’re also going to be much more comfortable for all involved. And besides, that will give me an excuse to show off my sketchbook, invite people on hikes, or talk about the books I’ve been reading.